1
40
325
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
A Longitudinal, Randomized, Controlled Trial Of Advance Care Planning For Teens With Cancer: Anxiety, Depression, Quality Of Life, Advance Directives, Spirituality
Publisher
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Journal Of Adolescent Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Adolescent; Adult; Advance Care Planning/statistics & Numerical Data; Advance Directives/psychology; Advance Directives/statistics & Numerical Data; Anxiety/complications; Anxiety/psychology; Depression/complications; Depression/psychology; Family; Feasibility Studies; Female; Follow-up Studies; Humans; Longitudinal Studies; Male; Neoplasms/complications; Neoplasms/psychology; Patient Satisfaction/statistics & Numerical Data; Quality Of Life/psychology; Spirituality; Surveys And Questionnaires; United States; Young Adult
Adolescent; Advance Care Planning; Advance Directive; African-american; Cancer; Communication; Decision-making; End Of Life; Family Intervention; Pediatric Palliative Care
Creator
An entity primarily responsible for making the resource
M.E. Lyon; Wang J
Description
An account of the resource
To test the feasibility, acceptability and safety of a pediatric advance care planning intervention, Family-Centered Advance Care Planning for Teens With Cancer (FACE-TC).
METHODS:
Adolescent (age 14-20 years)/family dyads (N = 30) with a cancer diagnosis participated in a two-armed, randomized, controlled trial. Exclusion criteria included severe depression and impaired mental status. Acceptability was measured by the Satisfaction Questionnaire. General Estimating Equations models assessed the impact of FACE-TC on 3-month post-intervention outcomes as measured by the Pediatric Quality of Life Inventory 4.0 Generic Core Scale, the Pediatric Quality of Life Inventory 4.0 Cancer-Specific Module, the Beck Depression and Anxiety Inventories, the Spiritual Well-Being Scale of the Functional Assessment of Chronic Illness Therapy-IV, and advance directive completion.
RESULTS:
Acceptability was demonstrated with enrollment of 72% of eligible families, 100% attendance at all three sessions, 93% retention at 3-month post-intervention, and 100% data completion. Intervention families rated FACE-TC worthwhile (100%), whereas adolescents' ratings increased over time (65%-82%). Adolescents' anxiety decreased significantly from baseline to 3 months post-intervention in both groups (β = -5.6; p = .0212). Low depressive symptom scores and high quality of life scores were maintained by adolescents in both groups. Advance directives were located easily in medical records (100% of FACE-TC adolescents vs. no controls). Oncologists received electronic copies. Total Spirituality scores (β = 8.1; p = .0296) were significantly higher among FACE-TC adolescents versus controls. The FACE-TC adolescents endorsed the best time to bring up end-of-life decisions: 19% before being sick, 19% at diagnosis, none when first ill or hospitalized, 25% when dying, and 38% for all of the above.
CONCLUSIONS:
Family-Centered Advance Care Planning for Teens With Cancer demonstrated feasibility and acceptability. Courageous adolescents willingly participated in highly structured, in-depth pediatric advance care planning conversations safely.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1016/j.jadohealth.2013.10.206
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2014
Adolescent
Adult
Advance Care Planning
Advance Care Planning/statistics & Numerical Data
Advance Directive
Advance Directives/psychology
Advance Directives/statistics & Numerical Data
African-american
Anxiety/complications
Anxiety/psychology
Cancer
Communication
Decision-making
Depression/complications
Depression/psychology
End Of Life
Family
Family Intervention
Feasibility Studies
Female
Follow-up Studies
Humans
Journal of Adolescent Health
July 2016 List
Longitudinal Studies
M.E. Lyon
Male
Neoplasms/complications
Neoplasms/psychology
Patient Satisfaction/statistics & Numerical Data
Pediatric Palliative Care
Quality Of Life/psychology
Spirituality
Surveys And Questionnaires
United States
Wang J
Young Adult
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
The Provision Of Spiritual And Pastoral Care Following Stillbirth In Ireland: A Mixed Methods Study
Publisher
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Bmj Supportive & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Attitude To Death; Bereavement; Chaplaincy Service Hospital/standards; Female; Hospitals Maternity/organization & Administration; Humans; Ireland; Male; Pastoral Care; Pregnancy; Professional-family Relations; Spirituality; Stillbirth/psychology
Bereavement; Chaplain; Pastoral Care; Spiritual Care; Stillbirth
Creator
An entity primarily responsible for making the resource
Daniel Nuzum; Sarah Meaney; Keelin O'Donoghue
Description
An account of the resource
Background The death of a baby is recognised as one of the most difficult bereavements with life-long impact for parents. How bereaved parents are cared for influences their grief journey. Optimal holistic care is provided when the physical, emotional, spiritual and social needs of parents are attended to. This study reviewed how spiritual care is provided to bereaved parents following stillbirth in maternity units in Ireland and the impact of stillbirth on healthcare chaplains.
Methods This was a mixed methods study using semistructured qualitative interviews with hospital chaplains in Irish maternity units. Quantitative data about the provision of services to bereaved parents were collated from the interviews. Qualitative data were analysed thematically to identify key themes.
Results 20 chaplains from 17 units participated in the study (85% of Irish maternity units). 12 chaplains (60%) are formally accredited chaplains; only one has received specialist training in perinatal bereavement care. 11 chaplains (55%) provide follow-up bereavement care. Seven chaplains (35%) did not feel part of the multidisciplinary team. The main themes that emerged were the impact of stillbirth, suffering and the challenge to faith creating inner conflict and doubt.
Conclusions The provision of spiritual care following stillbirth in Ireland is diverse. Spiritual care in this specialised area by chaplains who are not professionally trained and accredited potentially impacts quality and depth of care. Chaplains experience considerable impact and challenge to personal faith and belief as they provide care. Recommendations are made for ongoing education and greater support for chaplains.
Identifier
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<a href="http://dx.doi.org/10.1136/bmjspcare-2013-000533"></a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2014
Attitude To Death
Bereavement
BMJ Supportive & Palliative Care
Chaplain
Chaplaincy Service Hospital/standards
Daniel Nuzum
Female
Hospitals Maternity/organization & Administration
Humans
Ireland
June 2016 List
Keelin O'Donoghue
Male
Pastoral Care
Pregnancy
Professional-family Relations
Sarah Meaney
Spiritual Care
Spirituality
Stillbirth
Stillbirth/psychology
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Developing A Perinatal Memory-making Program At A Children's Hospital
Publisher
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American Journal Of Maternal/child Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Child Health; Female; Hospice Care/methods; Hospice Care/psychology; Hospitals; Humans; Infant Newborn; Memory; Perinatal Death; Postnatal Care/psychology; Pregnancy
Creator
An entity primarily responsible for making the resource
Miller LH; Lindley LC; Mixer SJ; Fornehed ML; Niederhauser VP.
Description
An account of the resource
events: a perinatal loss. Although grief processes have some common aspects, grief over a child can be especially intense, and those grieving such a loss have unique needs. One of the things that nurses can do to assist families in these situations is to assist them by creating memories of their child to help ease perinatal grief. This article describes the Precious Prints Project, a perinatal memory-making program designed to comfort families grieving the loss of a child. We discuss the development and implementation of this project, explore the literature, and show the strategies used to address the challenges encountered.
Identifier
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DOI: 10.1097/NMC.0000000000000016
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2014
American journal of maternal/child nursing
Child Health
Female
Fornehed ML
Hospice Care/methods
Hospice Care/psychology
Hospitals
Humans
Infant Newborn
Lindley LC
March 2016 List
Memory
Miller LH
Mixer SJ
Niederhauser VP.
Perinatal Death
Postnatal Care/psychology
Pregnancy
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2017 List
URL Address
http://www.ncbi.nlm.nih.gov/pubmed/25388195
Dublin Core
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Title
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Resilience And Death: The Nursing Professional In The Care Of Children And Adolescents With Life-limiting Illnesses
Publisher
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Ciencia & Saude Coletiva
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Adaptation Psychological; Adolescent; Attitude Of Health Personnel; Attitude To Death; Child; Chronic Disease; Humans; Nurses; Pediatric Nursing; Resilience Psychological; Terminal Care
Creator
An entity primarily responsible for making the resource
dos Santos Rosilene Aparecida; Moreira Martha Cristina Nunes
Description
An account of the resource
The purpose of this article is to analyze the resilience of the nursing staff in providing care for children and adolescents with chronic diseases, including coping with their deaths. The participants of this qualitative research were nursing professionals working in the pediatric ward of a hospital in the city of Rio de Janeiro, Brazil. The data collection was obtained by applying the resilience scale, by returning the scales in groups, and by semi-structured interviews. The relationship between professional resilience and coping with the process of children and adolescent's deaths stood out in the analysis based on data obtained from group and individual interviews. The care given to children and adolescents with life-limiting illnesses triggers resilience-related answers concerning alternatives that oscillate between individual reactions (religious and psychological support), and the search for an incipient collective support based on personal relationships. This study points out that this subject must be strategically handled to train this professional, who must be able to rely on support from the collective environment, presumed within the professional health care training and in the management of humanization at the hospital.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2014
Adaptation Psychological
Adolescent
Attitude Of Health Personnel
Attitude To Death
Child
Chronic Disease
Ciência & Saúde Coletiva
dos Santos Rosilene Aparecida
Humans
June 2017 List
Moreira Martha Cristina Nunes
Nurses
Pediatric Nursing
Resilience Psychological
Terminal Care
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
n/a
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Using colors to assess pain in toddlers: validation of "the rainbow pain scale"-a proof-of-principle study.
Publisher
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Journal Of Pediatric Oncology Nursing : Official Journal Of The Association Of Pediatric Oncology Nurses
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Color; Age Factors; Child; Child Preschool; Female; Humans; Infant; Inpatients/psychology; Male; Neoplasms/psychology; Oncology; Oncology Nursing/methods; Outpatients/psychology; Pain; Pain/diagnosis/psychology; Pain Measurement/methods; Pain Scale; Pediatric Nursing/methods; Preschool Children; Psychometrics/instrumentation; Self Report
Creator
An entity primarily responsible for making the resource
Mahon P; Holsti L; Siden H; Strahlendorf C; Turnham L; Giaschi D
Description
An account of the resource
Self-report, when available, is considered the ideal way to assess the intensity and other aspects of pain in children. However, self-report scales are often too complex cognitively for preschool-aged children (2-4 years). The Rainbow Pain Scale (RPS) was developed to provide individualized self-reported pain ratings for preschool-aged children. The psychometric properties of this scale have yet to be evaluated. To ensure validity, our first step was to compare RPS scores to a well-validated scale in older children who were able to self-report their pain. The purpose of this study was to assess the concurrent validity of the RPS in children aged 5 to 10 years as proof of principle. We compared ratings of 49 children's pain using the RPS with those on the Faces Pain Scale-Revised (FPS-R). Participants suffering from pain related to cancer and cancer treatment were recruited to complete both scales at 3 time points, during both inpatient and outpatient clinic visits. Pearson's r and Cohen's kappa were used to evaluate the level of association between the scales. The association between RPS and the
Identifier
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<a href="http://doi.org/10.1177/1043454214555197" target="_blank" rel="noreferrer">10.1177/1043454214555197</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2014
Age Factors
Child
Child Preschool
Color
Female
Giaschi D
Holsti L
Humans
Infant
Inpatients/psychology
Journal Of Pediatric Oncology Nursing : Official Journal Of The Association Of Pediatric Oncology Nurses
Mahon P
Male
Neoplasms/psychology
Oncology
Oncology Nursing/methods
Outpatients/psychology
Pain
Pain Measurement/methods
Pain Scale
Pain/diagnosis/psychology
Pediatric Nursing/methods
Preschool Children
Psychometrics/instrumentation
Self Report
Siden H
Strahlendorf C
Turnham L
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
n/a
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
An integrative approach to music therapy in pediatric palliative care.
Publisher
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Journal Of Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Hospices; Music Therapy; Palliative Care; Adolescent; British Columbia; Child; Child Preschool; Female; Humans; Infant; Male; Program Development; Program Evaluation; Young Adult
Creator
An entity primarily responsible for making the resource
Clark BA; Siden H; Straatman L
Identifier
An unambiguous reference to the resource within a given context
<a href="https://www.ncbi.nlm.nih.gov/pubmed/25265742" target="_blank" rel="noreferrer">25265742</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2014
Adolescent
British Columbia
Child
Child Preschool
Clark BA
Female
Hospices
Humans
Infant
Journal Of Palliative Care
Male
Music Therapy
Palliative Care
Program Development
Program Evaluation
Siden H
Straatman L
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
n/a
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Characteristics of a pediatric hospice palliative care program over 15 years.
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
British Columbia/epidemiology; Child; Child Preschool; Cohort Studies; Demographics; Female; Hospice Care; Hospices/methods/trends; Humans; Life Threatening; Male; Palliative Care; Palliative Care/methods/trends; Patient Care Team/trends; Pediatrics/methods/trends; Retrospective Studies; Survival Rate/trends; Time Factors
Creator
An entity primarily responsible for making the resource
Siden H; Chavoshi N; Harvey B; Parker A; Miller T
Description
An account of the resource
OBJECTIVES: Pediatric palliative care has seen the adoption of several service provision models, yet there is minimal literature describing them. Canuck Place Children's Hospice (CPCH) is North America's first freestanding pediatric hospice. This study describes the characteristics of and services delivered to all children on the CPCH program from 1996 to 2010. METHODS: A retrospective review of all patient medical records CPCH was conducted. Analyses examined trends and correlations between 40 selected data points: linear regression modeling was used to assess trends over time; t tests were used to examine significant associations between independent means; and the Kaplan-Meier method was used to measure survival probabilities. RESULTS: The study cohort included 649 children. The majority of diagnoses belonged to cancers (30%), and diseases of the neuromuscular (20%), and central nervous systems (18%). The majority of deaths occurred among the cancer (45%), central nervous system (15%), and metabolic disease groups (14%). By study end date, 24% of children were still alive, 61% died, and 15% transitioned to adult services (more than half of whom were cognitively competent). On average, 1024 days were spent on the CPCH program (median = 301). The majority of inpatient hospice discharges were for respite (82%); only 7% were for end-of-life care. Location of death was shared between CPCH (61%), hospital (22%), and home (16%). CONCLUSIONS: Diagnostic groups largely determine the nature and magnitude of services used, and our involvement with pediatric life-threatening conditions is increasing. Reviews of pediatric palliative programs can help evaluate the services needed by the population served.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2014-0381" target="_blank" rel="noreferrer">10.1542/peds.2014-0381</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2014
British Columbia/epidemiology
Chavoshi N
Child
Child Preschool
Cohort Studies
Demographics
Female
Harvey B
Hospice Care
Hospices/methods/trends
Humans
Life Threatening
Male
Miller T
Palliative Care
Palliative Care/methods/trends
Parker A
Patient Care Team/trends
Pediatrics
Pediatrics/methods/trends
Retrospective Studies
Siden H
Survival Rate/trends
Time Factors
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
n/a
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Impact of research participation on parents of seriously ill children.
Publisher
An entity responsible for making the resource available
Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Biomedical Research; Child Health Services; Adolescent; Adult; Child; Child Preschool; Female; Humans; Infant; Infant Newborn; Male; Middle Aged; Palliative Care; Parents/psychology; Severity Of Illness Index; Surveys And Questionnaires; Young Adult
Creator
An entity primarily responsible for making the resource
Steele R; Cadell S; Siden H; Andrews GS; Smit QT; Feichtinger L
Description
An account of the resource
BACKGROUND: There is a paucity of research evidence to guide health care providers' practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of concerns about further burdening families. Yet, there is some evidence that research participation can have positive effects for families. OBJECTIVE: To obtain parents' perceptions about their experience of participating in one of two research studies. DESIGN: Descriptive, quantitative survey. SETTING/SUBJECTS: Caregivers of children with life-threatening conditions (n=323) who were caring for the child at home. MEASUREMENTS: Researcher-designed Impact of Participation questionnaire. RESULTS: Few differences between the two groups were found on Impact responses. Not a single parent reported regretting participating in their study and almost all (96.3%) reported that conducting research about family's experiences in pediatric palliative care had value. Just over three-quarters (76.2%) did not find participation at all painful, and 73.7% reported that participation was about as painful as expected, with 23.2% reporting less painful. Approximately half (50.5%) said that participation had at least some positive effect and only three parents reported any negative effect. An overwhelming majority (93.4%) would recommend participation to other parents in a similar situation. CONCLUSIONS: Participation in research for families with children who have a life-threatening condition is not only acceptable to parents, but may in fact have a positive effect. Although clinicians and Institutional Review Boards may be hesitant to fully support such research, it is clear that conducting research in the field of pediatric palliative care is important.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2013.0529" target="_blank" rel="noreferrer">10.1089/jpm.2013.0529</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2014
Adolescent
Adult
Andrews GS
Biomedical Research
Cadell S
Charting the territory
Child
Child Health Services
Child Preschool
Feichtinger L
Female
Humans
Infant
Infant Newborn
Journal of Palliative Medicine
Male
Middle Aged
Palliative Care
Parents/psychology
Severity Of Illness Index
Siden H
Smit QT
Steele R
Surveys And Questionnaires
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
n/a
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Posttraumatic growth in parents caring for a child with a life-limiting illness: A structural equation model.
Publisher
An entity responsible for making the resource available
The American Journal Of Orthopsychiatry
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Human Development; Adult; Aged; Caregivers/psychology; Child; Disabled Children/psychology; Humans; Male; Middle Aged; Models Psychological; Palliative Care/psychology; Parents/psychology; Young Adult
Creator
An entity primarily responsible for making the resource
Cadell S; Hemsworth D; Smit QT; Steele R; Davies E; Liben S; Straatman L; Siden H
Description
An account of the resource
When parents first meet their child, they take on the entwined joys and burdens of caring for another person. Providing care for their child becomes the basic expectation, during health and illness, through the developmental milestones, into adulthood and beyond. For those parents who have a child who is born with or is later diagnosed with a life-limiting illness, parents also become caregivers in ways that parents of predominantly well children do not. While the circumstances are undisputedly stressful, for some parents benefits can co-occur along with the negative outcomes. This article tests two structural equation models of possible factors that allow these parent caregivers to experience growth in the circumstances. The diagnosis and illness of a child in the context of pediatric palliative care is a very complex experience for parents. The stresses are numerous and life-changing and yet the parents in this research demonstrated growth as measured by the Post Traumatic Growth Inventory. It appears that particular personal resources reflected in personal well-being are a precursor to the process of positive meaning making, which then, in turn, contributes to growth. The path to posttraumatic growth is not a simple one, but this research contributes to further elucidating it.
Identifier
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<a href="http://doi.org/10.1037/h0099384" target="_blank" rel="noreferrer">10.1037/h0099384</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2014
Adult
Aged
Cadell S
Caregivers/psychology
Child
Davies E
Disabled Children/psychology
Hemsworth D
Human Development
Humans
Liben S
Male
Middle Aged
Models Psychological
Palliative Care/psychology
Parents/psychology
Siden H
Smit QT
Steele R
Straatman L
The American Journal Of Orthopsychiatry
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
n/a
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Mortality trends for pediatric life-threatening conditions.
Publisher
An entity responsible for making the resource available
The American Journal Of Hospice & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Pediatrics; Adolescent; British Columbia; Cause Of Death; Child; Child Mortality/trends; Child Preschool; Female; Hospice; Hospice Care/statistics & Numerical Data; Humans; Illness; Infant; Infant Newborn; Life-threatening Conditions; Male; Mortality; Palliative; Palliative Care/statistics & Numerical Data; Pediatric
Creator
An entity primarily responsible for making the resource
Chavoshi N; Miller T; Siden H
Description
An account of the resource
Internal data from the sole pediatric hospice in British Columbia were utilized to investigate mortality trends among children dying from life-threatening conditions. Characteristics of the sample (hospice) were compared to that of the population (province) for individuals aged 0 to 18 years from 2002 to 2011. The provincial death rate was 2.30 per 10 000. The sample did not significantly vary with respect to sex and geographic distribution when compared to the population. Infants contributed to a significantly larger proportion of pediatric deaths in the population. Children referred to the hospice were more likely to be diagnosed with cancer and diseases of the nervous system. Only 15% of all pediatric deaths due to disease in the province were cared for by the hospice, calling for the strengthening of interdisciplinary palliative care programs.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1049909114524476" target="_blank" rel="noreferrer">10.1177/1049909114524476</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2014
Adolescent
British Columbia
Cause Of Death
Chavoshi N
Child
Child Mortality/trends
Child Preschool
Female
Hospice
Hospice Care/statistics & Numerical Data
Humans
Illness
Infant
Infant Newborn
Life-threatening Conditions
Male
Miller T
Mortality
Palliative
Palliative Care/statistics & Numerical Data
Pediatric
Pediatrics
Siden H
The American Journal of Hospice & Palliative Care
-
https://d1y502jg6fpugt.cloudfront.net/32554/archive/files/cacee21b5d5131ea60c92e175c8c6d34.pdf?Expires=1712793600&Signature=FYjEagVmR9EaG31u9876bRDgpkKs1u%7EJB8MvUidLAq%7E2VNwhlLchOu-wLWk9NTqFech7A7a%7Et5P1F4WN%7EvYtarxxVB-UYEcD%7ErdxA4NH-JiX5HcXWysOSsO6inzEs5quWVdopkGhC4rOW-jXh2n7ibccmicLl70iFSAzIIJQ5%7Ee6KW04-DvrGa2po9RbrHXLNtc1rh9NpKLs3dCCdmyKCebzMSCjFJG8aT1V1n3Bz0ALGioUefE%7E0FIoYrApl0bblwQ9QkosuyoiSZwtqZ7o7v46BY-BG5pJoO0iMiSFECVAedKcJghOWcHb2Lw-LuxnwYn6Tz%7EuxK7saZMekzTYoA__&Key-Pair-Id=K6UGZS9ZTDSZM
112413635b1c6539f94e0fcd5972071f
Dublin Core
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Title
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PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Lexicon of Terms in Pediatric Palliative Care
Creator
An entity primarily responsible for making the resource
Spicer S, MacDonald ME, Vadeboncoeur C, Davies D, Siden H
Publisher
An entity responsible for making the resource available
PedPalASCNET
Description
An account of the resource
This Lexicon has been developed through a collaborative process by the PedPalASCNET network members as a tool for clinicians and researchers to standardize the usage of common terms in the field of pediatric palliative care. The Lexicon reflects the use of these words in Canada in the context of care for children with chronic complex and life-threatening conditions.
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© PedPalASCNET
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
2014
Davies D
Macdonald ME
Siden H
Spicer S
Vadeboncoeur C
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
n/a
URL Address
<a href="http://nsuworks.nova.edu/tqr/vol19/iss39/1/" target="_blank" rel="noreferrer">http://nsuworks.nova.edu/tqr/vol19/iss39/1/</a>
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Title
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Innovations in Research with Medically Fragile Populations: Using Bulletin Board Focus Groups
Publisher
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The Qualitative Report
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Bulletin Board Focus Group; Case Studies; Complexity; Disability/Disabled Persons; End-Of-Life Issues; Focus Groups; Illness and Disease; Young Adults
Creator
An entity primarily responsible for making the resource
Cook K; Jack S; Siden H; Thabane L; Browne G
Description
An account of the resource
A new group of medically fragile young adults are graduating from pediatric palliative care programs with limited expectations to live beyond early adulthood, and no comparable adult services to support their complex needs. Accessing this population is difficult because of the complexity of their conditions, the extensive personal and equipment supports that limit feasibility for travel, and divergent communication abilities. Therefore, we undertook a descriptive case study using an asynchronous modification of an online focus group, a bulletin board focus group (BBFG). The greatest strengths of the BBFG are the appeal of this methodology for young adults and the multi day focus group becomes both a community and an intervention. An important limitation of this method was participant follow through on discussion threads. This BBFG provided rich and varied types of data, and very positive participant experiences. Keywords: Bulletin Board Focus Group, Case Studies, Complexity, Disability/Disabled Persons, End-Of-Life Issues, Focus Groups, Illness and Disease, Young Adults
Identifier
An unambiguous reference to the resource within a given context
<a href="http://nsuworks.nova.edu/tqr/vol19/iss39/1/" target="_blank" rel="noreferrer">tqr/vol19/iss39/1</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2014
Browne G
Bulletin Board Focus Group
Case Studies
Complexity
Cook K
Disability/Disabled Persons
End-Of-Life Issues
Focus Groups
Illness and Disease
Jack S
Siden H
Thabane L
The Qualitative Report
Young Adults
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Oncology
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2017 List
URL Address
<a href="http://doi.org/10.1177/1043454214529022" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1043454214529022</a>
Dublin Core
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Title
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Cultural Influences in Pediatric Cancer from Diagnosis to Cure/End of Life
Publisher
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Journal Of Pediatric Oncology Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Adaptation; Caregivers/px [psychology]; Cultural Characteristics; Neoplasms/px [psychology]; Patients/px [psychology]; Survivors/px [psychology]; Adolescent; Adult; Child; Humans; Infant; Middle Aged; Newborn; Preschool; Psychological
Creator
An entity primarily responsible for making the resource
Gray WN; Szulczewski LJ; Regan SMP; Williams JA; Pai AL
Description
An account of the resource
OBJECTIVE: To review the literature on cultural factors influencing clinical care and family management of pediatric cancer. METHODS: A literature review including 72 articles related to cultural issues in pediatric cancer was conducted. Information was organized around several clinically driven themes. RESULTS: Cultural factors influenced many aspects of the cancer experience including illness representations, reaction to diagnosis, illness disclosure patterns, complementary and alternative medicine use, management of medical procedures, coping strategies, and end of life issues. CONCLUSION: Increased awareness of cultural factors is needed to improve clinical care and reduce health disparities. Specific strategies to approach cultural differences are provided to enhance patient and family care from diagnosis to cure/end of life.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1043454214529022" target="_blank" rel="noreferrer noopener">10.1177/1043454214529022</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2014
Adaptation
Adolescent
Adult
Caregivers/px [psychology]
Child
Cultural Characteristics
Gray WN
Humans
Infant
Journal Of Pediatric Oncology Nursing
Middle Aged
Neoplasms/px [psychology]
Newborn
Oncology 2017 List
Pai AL
Patients/px [psychology]
Preschool
Psychological
Regan SMP
Survivors/px [psychology]
Szulczewski LJ
Williams JA
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
January 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January 2018 List
URL Address
<a href="http://doi.org/10.1007/s11013-013-9355-6" target="_blank" rel="noreferrer">http://doi.org/10.1007/s11013-013-9355-6</a>
Dublin Core
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Title
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Some general considerations of a human-based medicine's palliative approach to the vulnerability of the multiply disabled child before the end of life
Publisher
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Culture, Medicine & Psychiatry
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Disabled Children/px [Psychology]; Palliative Medicine/st [Standards]; Terminal Care/st [Standards]; Vulnerable Populations/px [Psychology]; Child; Humans; Palliative Medicine/mt [Methods]; Terminal Care/mt [Methods]
Creator
An entity primarily responsible for making the resource
Viallard ML
Description
An account of the resource
Specificities of situation of individuals with multiple disabilities and pediatric neurological pathologies call for specialized and multi-field competences that are commonly allowed and disallowed in contemporary clinical contexts. However what must be questioned in this matter is not only the meaning of the clinical, social, and human approach that is implemented, but also its spirit. The aim of medicine is double: to offer a technoscientific capacity (to cure as much as it is possible and always relieve suffering) and guarantee the meaning and value of the child's human and social capacities. We suggest the importance of a medicine always as care-giving whose aim(s) can be either curative or palliative, or even both at the same time with possibilities for moving back and forth between each one, is easily understandable by all professional groups and patients. It is not at the time of the death, at the last moments, that we will be able to introduce what could have given meaning, spirit and comfort in life. It is very early in the life, in the approach of care, to precisely preserve a meaning of life and to take adapted and shared care as a precious tool that we will propose to the patients, to the parents, and to the professionals. Palliative medicine can support a caring and human approach that takes account of the handicapped child's vulnerabilities not only at the end of his life, but throughout his/her life. The palliative approach and reasoning approach requires a specific, adapted training and the development of shared knowledge. Without giving up the indisputable contributions of the Evidence-Based Medicine (EBM), it is necessary to develop, in a scientific way, what we could call Human-Based Medicine (HBM).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s11013-013-9355-6" target="_blank" rel="noreferrer">10.1007/s11013-013-9355-6</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2014
Child
Culture, Medicine & Psychiatry
Disabled Children/px [Psychology]
Humans
January 2018 List
Palliative Medicine/mt [methods]
Palliative Medicine/st [Standards]
Terminal Care/mt [methods]
Terminal Care/st [standards]
Viallard ML
Vulnerable Populations/px [Psychology]
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
January 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January 2018 List
URL Address
<a href="http://doi.org/10.1007/s00431-014-2304-8" target="_blank" rel="noreferrer">http://doi.org/10.1007/s00431-014-2304-8</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Pain therapy, pediatric palliative care and end-of-life care: training, experience, and reactions of pediatric residents in Italy
Publisher
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European Journal Of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Internship and Residency; Pain/dt [Drug Therapy]; Palliative Care; Pediatrics/ed [Education]; Terminal Care; Adult; Child; Female; Humans; Italy; Male; Middle Aged; Needs Assessment; Palliative Care/st [Standards]; Palliative Care/td [Trends]; Surveys and Questionnaires; Terminal Care/st [Standards]; Terminal Care/td [Trends]
Creator
An entity primarily responsible for making the resource
Rusalen F; Ferrante A; Po C; Salata M; Agosto C; Benini F
Description
An account of the resource
UNLABELLED: Pediatric palliative care represents the ideal response to life-limiting and life-threatening diseases and requires a specific and multidisciplinary training. This study aims at evaluating in Italy the training programs offered in pain therapy and pediatric palliative care, the exposure, and the personal experience concerning end-of-life care management. The data have been obtained through a survey addressed to all the residents specializing in pediatrics in Italy. Three hundred forty-eight of 1,200 residents from 33 of the 41 schools of pediatrics existing in Italy responded to the questionnaire. One hundred seventy-four of them (50 %) declared they received training in end-of-life care at least once: 146 during their graduation course of medicine, 84 during the pediatric residency, and 54 in both occasions. Sixty percent of respondents were present at one death at least, with an increasing percentage in the last years of residency (91.5 % in the fifth year) but only 12 % were directly involved in the management (36.2 % in the fifth year); 5.7 % managed at least one communication of death; 12.6 % followed sedo-analgesia protocols. Only 11 % of residents felt ready to face end-of-life care management. CONCLUSION: The training in end-of-life care in Italy is not currently satisfactory. Further efforts are therefore required to create a comprehensive and multidisciplinary training.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00431-014-2304-8" target="_blank" rel="noreferrer">10.1007/s00431-014-2304-8</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2014
Adult
Agosto C
Benini F
Child
European Journal of Pediatrics
Female
Ferrante A
Humans
Internship And Residency
Italy
January 2018 List
Male
Middle Aged
Needs Assessment
Pain/dt [drug Therapy]
Palliative Care
Palliative Care/st [standards]
Palliative Care/td [trends]
Pediatrics/ed [education]
Po C
Rusalen F
Salata M
Surveys And Questionnaires
Terminal Care
Terminal Care/st [standards]
Terminal Care/td [trends]
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Book Publications
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://www.puq.ca/catalogue/livres/soutien-aux-familles-enfants-gravement-malades-2493.html" target="_blank" rel="noreferrer">http://www.puq.ca/catalogue/livres/soutien-aux-familles-enfants-gravement-malades-2493.html</a>
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Title
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Le soutien aux familles d’enfants gravement malades
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Description
An account of the resource
Les enfants gravement malades, grâce aux progrès biomédicaux, survivent aujourd’hui plus longtemps qu’auparavant. Bien qu’heureuse, cette situation complexifie le quotidien des familles, qui subissent un alourdissement des soins. S’intéres...
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
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Book/Book Section
2014
Book/Book Section
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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March 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2018 List
Dublin Core
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Title
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Paediatric palliative care in Denmark should be strengthened
Publisher
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Ugeskrift For Laeger
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
standards; adolescent; Child; complication; Denmark; Family; Human; infant; neoplasm/ep [Epidemiology]; neoplasm/th [Therapy]; Palliative therapy; Patient Care; preschool child
Creator
An entity primarily responsible for making the resource
Jespersen BA; Clausen N; Sjogren P
Description
An account of the resource
Paediatric palliative care is the total care for the child's body, mind and spirit, and involves support to the family. It begins when a life-threatening disease is diagnosed and depends on an interdisciplinary team approach. In 2013, 295 children under the age of 16 years died in Denmark. Of these, 195 were less than one year old. Most children and their families may prefer death at home if possible. Early planning allows for better integration of home-care services and ensures that death occurs at the place that is best for the child and family.
2014
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2014
Adolescent
Child
Clausen N
Complication
Denmark
Family
Human
Infant
Jespersen BA
March 2018 List
neoplasm/ep [Epidemiology]
neoplasm/th [Therapy]
Palliative Therapy
Patient Care
Preschool Child
Sjogren P
Standards
Ugeskrift For Laeger
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://www5.statcan.gc.ca/cansim/a26?Lang=eng&retrLang=eng&id=1050592&paSer=&pattern=&stByVal=1&p1=1&p2=-1&tabMode=dataTable&csid=" target="_blank" rel="noreferrer">http://www5.statcan.gc.ca/cansim/a26?Lang=eng&retrLang=eng&id=1050592&paSer=&pattern=&stByVal=1&p1=1&p2=-1&tabMode=dataTable&csid=</a>
Dublin Core
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Title
A name given to the resource
CANSIM - 105-0592 - Health indicator profile, two-year period estimates, by age group and sex, Canada, provinces, territories, census metropolitan areas and influence zones
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Social Support and Chronic Pain; none
Creator
An entity primarily responsible for making the resource
Statistics Canada Government of Canada
Description
An account of the resource
Health indicator profile, two-year period estimates, by age group and sex, Canada, provinces, territories, census metropolitan areas and influence zones
2014-03
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2014
Backlog
Journal Article
none
Social Support and Chronic Pain
Statistics Canada Government of Canada
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://www2.publicationsduquebec.gouv.qc.ca/dynamicSearch/telecharge.php?type=2&file=%2F%2FS_32_0001%2FS32_0001.htm" target="_blank" rel="noreferrer">http://www2.publicationsduquebec.gouv.qc.ca/dynamicSearch/telecharge.php?type=2&file=%2F%2FS_32_0001%2FS32_0001.htm</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Loi concernant les soins de fin de vie,
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Creator
An entity primarily responsible for making the resource
Éditeur officiel du Québec
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2014-06
2014
Backlog
Éditeur officiel du Québec
Journal Article
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1016/S0140-6736(14)61305-2" target="_blank" rel="noreferrer">http://doi.org/10.1016/S0140-6736(14)61305-2</a>
<a href="http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(14)61305-2/fulltext" target="_blank" rel="noreferrer">http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(14)61305-2/fulltext</a>
Dublin Core
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Title
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Neonatal and infant death: the Apgar score reassessed
Publisher
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The Lancet
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Creator
An entity primarily responsible for making the resource
Laptook AR
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/S0140-6736(14)61305-2" target="_blank" rel="noreferrer">10.1016/S0140-6736(14)61305-2</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2014-09
2014
Backlog
Journal Article
Laptook AR
The Lancet
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1016/S0140-6736(13)61090-9" target="_blank" rel="noreferrer">http://doi.org/10.1016/S0140-6736(13)61090-9</a>
<a href="http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(13)61090-9/abstract" target="_blank" rel="noreferrer">http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(13)61090-9/abstract</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Patterns of child death in England and Wales
Publisher
An entity responsible for making the resource available
The Lancet
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Creator
An entity primarily responsible for making the resource
Sidebotham P; Fraser J; Fleming P; Ward-Platt M; Hain R
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/S0140-6736(13)61090-9" target="_blank" rel="noreferrer">10.1016/S0140-6736(13)61090-9</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2014-09
2014
Backlog
Fleming P
Fraser J
Hain R
Journal Article
Sidebotham P
The Lancet
Ward-Platt M
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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<a href="http://doi.org/10.1016/S0140-6736(13)61089-2" target="_blank" rel="noreferrer">http://doi.org/10.1016/S0140-6736(13)61089-2</a>
<a href="http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(13)61089-2/abstract" target="_blank" rel="noreferrer">http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(13)61089-2/abstract</a>
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Title
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Learning from child death review in the USA, England, Australia, and New Zealand
Publisher
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The Lancet
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Creator
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Fraser J; Sidebotham P; Frederick J; Covington T; Mitchell EA
Identifier
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<a href="http://doi.org/10.1016/S0140-6736(13)61089-2" target="_blank" rel="noreferrer">10.1016/S0140-6736(13)61089-2</a>
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Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2014-09
2014
Backlog
Covington T
Fraser J
Frederick J
Journal Article
Mitchell EA
Sidebotham P
The Lancet
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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<a href="http://doi.org/10.1016/j.soncn.2014.08.003" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.soncn.2014.08.003</a>
<a href="http://www.seminarsoncologynursing.com/article/S0749208114000631/abstract" target="_blank" rel="noreferrer">http://www.seminarsoncologynursing.com/article/S0749208114000631/abstract</a>
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Title
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Contributions of Palliative Care to Pediatric Patient Care
Publisher
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Seminars In Oncology Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
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Pediatric oncology; Nursing; Pediatric palliative care
Creator
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Mandac C; Battista V
Description
An account of the resource
Objectives To provide an overview of pediatric palliative care (PPC) as it relates to children and families living with oncologic disease. Data Sources Journal articles, clinical research reports, clinical guidelines, and national statistics. Conclusion As new treatment protocols become available, the need for simultaneous supportive PPC, including adequate pain and symptom management, is evident. Further research and PPC program development is necessary for adherence to the current recommendation that PPC should be initiated at the time of diagnosis and continue throughout the course of a child's disease. Implications for Nursing Practice Palliative care nursing holds a specific role in the pediatric oncology setting. Registered nurses and advanced practice nurses should be adequately trained in PPC because they are in an optimal role to contribute to interdisciplinary PPC for pediatric oncology patients and their families.
2014-11
Identifier
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<a href="http://doi.org/10.1016/j.soncn.2014.08.003" target="_blank" rel="noreferrer">10.1016/j.soncn.2014.08.003</a>
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Type
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Journal Article
2014
Backlog
Battista V
Journal Article
Mandac C
Nursing
Pediatric Oncology
Pediatric Palliative Care
Seminars In Oncology Nursing
-
Text
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<a href="http://doi.org/10.1590/1983-1447.2014.03.43224" target="_blank" rel="noreferrer">http://doi.org/10.1590/1983-1447.2014.03.43224</a>
<a href="http://www.scielo.br/scielo.php?script=sci_abstract&pid=S1983-14472014000300111&lng=en&nrm=iso&tlng=en" target="_blank" rel="noreferrer">http://www.scielo.br/scielo.php?script=sci_abstract&pid=S1983-14472014000300111&lng=en&nrm=iso&tlng=en</a>
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Title
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The use of playing by the nursing staff on palliative care for children with cancer
Publisher
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Revista Gaúcha De Enfermagem
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Creator
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Soares Vanessa Albuquerque; da Silva LF; Cursino EG; Goes Fernanda Garcia Bezerra; Soares Vanessa Albuquerque; da Silva LF; Cursino EG; Goes Fernanda Garcia Bezerra
Description
An account of the resource
This study aimed to describe ways of using play by the nursing staff on palliative care of children with cancer and analyze the facilitators and barriers of the use of playing on this type of care. Qualitative, descriptive research developed on November 2012 with 11 health professionals, in a public hospital of the state of Rio de Janeiro. Semi-structured interviews and thematic analysis of the information were conducted. The use of playing before procedures was highlighted as a facilitator on palliative care. The child's physical condition, one's restriction, resistance of some professionals and the lack of time for developing this activity, made the use of play harder. We concluded that playing enables the child with cancer, in palliative care, a humanized assistance, being fundamental to integrate it on the care for these children.Key words: Palliative care; Pediatric nursing; Play and playthings; Neoplasms
2014-09
Identifier
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<a href="http://doi.org/10.1590/1983-1447.2014.03.43224" target="_blank" rel="noreferrer">10.1590/1983-1447.2014.03.43224</a>
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Type
The nature or genre of the resource
Journal Article
2014
Backlog
Cursino EG
da Silva LF
Goes Fernanda Garcia Bezerra
Journal Article
Revista Gaúcha De Enfermagem
Soares Vanessa Albuquerque
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1186/1742-4755-11-11" target="_blank" rel="noreferrer">http://doi.org/10.1186/1742-4755-11-11</a>
<a href="http://www.reproductive-health-journal.com/content/11/1/11/abstract" target="_blank" rel="noreferrer">http://www.reproductive-health-journal.com/content/11/1/11/abstract</a>
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Title
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Risk factors for perinatal death in two different levels of care: a case–control study
Publisher
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Reproductive Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
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Risk Factors; Care levels; Maternity; Perinatal death
Creator
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Silveira Soares Moura PM; Maestá I; Rugolo Lígia Maria Souza Suppo; Angulski LFRB; Caldeira AP; Peraçoli JC; Rudge MVC
Description
An account of the resource
According to the World Health Organization, there are over 6.3 million perinatal deaths (PND) a year worldwide. Identifying the factors associated with PND is very helpful in building strategies to improve the care provided to mothers and their babies. PMID: 24476422
2014-01
Identifier
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<a href="http://doi.org/10.1186/1742-4755-11-11" target="_blank" rel="noreferrer">10.1186/1742-4755-11-11</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2014
Angulski LFRB
Backlog
Caldeira AP
Care levels
Journal Article
Maestá I
Maternity
Peraçoli JC
Perinatal Death
Reproductive Health
Risk Factors
Rudge MVC
Rugolo Lígia Maria Souza Suppo
Silveira Soares Moura PM
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://www.nytimes.com/2014/05/11/business/a-soldiers-war-on-pain.html" target="_blank" rel="noreferrer">http://www.nytimes.com/2014/05/11/business/a-soldiers-war-on-pain.html</a>
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Title
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A Soldier’s War on Pain
Publisher
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The New York Times
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
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Pain; Veterans; Afghanistan War (2001- ); Opioids; Pain-Relieving Drugs; Savage; Shane; Therapy and Rehabilitation; United States Defense and Military Forces; Veterans Affairs Department
Creator
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Meier B
Description
An account of the resource
After turning away from prescribed narcotics, a wounded Army sergeant has found hope. And some doctors see lessons for the business of long-term pain management.
2014-05
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Type
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Journal Article
2014
Afghanistan War (2001- )
Backlog
Journal Article
Meier B
Opioids
Pain
Pain-Relieving Drugs
Savage
Shane
The New York Times
Therapy and Rehabilitation
United States Defense and Military Forces
Veterans
Veterans Affairs Department
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1186/1745-6215-15-33" target="_blank" rel="noreferrer">http://doi.org/10.1186/1745-6215-15-33</a>
<a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3902027/" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3902027/</a>
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Title
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Methodological survey of designed uneven randomization trials (DU-RANDOM): a protocol
Publisher
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Trials
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Creator
An entity primarily responsible for making the resource
Wu Darong; Akl EA; Guyatt G; Devereaux PJ; Brignardello-Petersen R; Prediger B; Patel K; Patel N; Lu Taoying; Zhang Y; Falavigna M; Santesso N; Mustafa RA; Zhou Qi; Briel M; Schunemann HJ
Description
An account of the resource
Background Although even randomization (that is, approximately 1:1 randomization ratio in study arms) provides the greatest statistical power, designed uneven randomization (DUR), (for example, 1:2 or 1:3) is used to increase participation rates. Until now, no convincing data exists addressing the impact of DUR on participation rates in trials. The objective of this study is to evaluate the epidemiology and to explore factors associated with DUR. Methods We will search for reports of RCTs published within two years in 25 general medical journals with the highest impact factor according to the Journal Citation Report (JCR)-2010. Teams of two reviewers will determine eligibility and extract relevant information from eligible RCTs in duplicate and using standardized forms. We will report the prevalence of DUR trials, the reported reasons for using DUR, and perform a linear regression analysis to estimate the association between the randomization ratio and the associated factors, including participation rate, type of informed consent, clinical area, and so on. Discussion A clearer understanding of RCTs with DUR and its association with factors in trials, for example, participation rate, can optimize trial design and may have important implications for both researchers and users of the medical literature.
2014-01
Identifier
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<a href="http://doi.org/10.1186/1745-6215-15-33" target="_blank" rel="noreferrer">10.1186/1745-6215-15-33</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2014
Akl EA
Backlog
Briel M
Brignardello-Petersen R
Devereaux PJ
Falavigna M
Guyatt G
Journal Article
Lu Taoying
Mustafa RA
Patel K
Patel N
Prediger B
Santesso N
Schunemann HJ
Trials
Wu Darong
Zhang Y
Zhou Qi
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.6061/clinics/2014(01)08" target="_blank" rel="noreferrer">http://doi.org/10.6061/clinics/2014(01)08</a>
<a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3870309/" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3870309/</a>
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Title
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Risk factors associated with death in Brazilian children with severe dengue: a case-control study
Publisher
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Clinics
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Creator
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dos Remedios Freitas Carvalho Branco Maria; de Albuquerque Luna Expedito Jose; Braga Junior LL; de Oliveira Ricardo Villar Barbosa; Rios Livia Teresa Moreira; do Socorro da Silva M; Medeiros Maria Nilza Lima; Silva GF; Nina Fernanda Campos Amaral Figueiredo; Lima Taliane Jardim; Brito JA; de Oliveira Avessandra Costa Cardoso; Pannuti CS
Description
An account of the resource
OBJECTIVE: The purpose of this case-control study was to evaluate risk factors associated with death in children with severe dengue. METHODS: The clinical condition of hospitalized patients with severe dengue who died (cases, n = 18) was compared with that of hospitalized patients with severe dengue who survived (controls, n = 77). The inclusion criteria for this study were age under 13 years; hospital admission in São Luis, northeastern Brazil; and laboratory-confirmed diagnosis of dengue. RESULTS: Severe bleeding (hemoptysis), a defining criterion for dengue severity, was the factor most strongly associated with death in our study. We also found that epistaxis and persistent vomiting, both included as warning signs in the World Health Organization (WHO) classification of dengue, were strongly associated with death. No significant association was observed between any of the laboratory findings and death. CONCLUSIONS: The finding that epistaxis and persistent vomiting were also associated with death in children with severe dengue was unexpected and deserves to be explored in future studies. Because intensive care units are often limited in resource-poor settings, any information that can help to distinguish patients with severe dengue with a higher risk to progress to death may be crucial.
2014-01
Identifier
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<a href="http://doi.org/10.6061/clinics/2014(01)08" target="_blank" rel="noreferrer">10.6061/clinics/2014(01)08</a>
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Type
The nature or genre of the resource
Journal Article
2014
Backlog
Braga Junior LL
Brito JA
Clinics
de Albuquerque Luna Expedito Jose
de Oliveira Avessandra Costa Cardoso
de Oliveira Ricardo Villar Barbosa
do Socorro da Silva M
dos Remedios Freitas Carvalho Branco Maria
Journal Article
Lima Taliane Jardim
Medeiros Maria Nilza Lima
Nina Fernanda Campos Amaral Figueiredo
Pannuti CS
Rios Livia Teresa Moreira
Silva GF
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1038/jp.2014.170" target="_blank" rel="noreferrer">http://doi.org/10.1038/jp.2014.170</a>
<a href="http://www.nature.com/jp/journal/vaop/ncurrent/full/jp2014170a.html" target="_blank" rel="noreferrer">http://www.nature.com/jp/journal/vaop/ncurrent/full/jp2014170a.html</a>
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Title
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Does diagnosis influence end-of-life decisions in the neonatal intensive care unit?
Publisher
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Journal Of Perinatology
Date
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2014
Creator
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Weiner J; Sharma J; Lantos JD; Kilbride H
Description
An account of the resource
Objective: Study Design: Result: Conclusion:
2014-09
Identifier
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<a href="http://doi.org/10.1038/jp.2014.170" target="_blank" rel="noreferrer">10.1038/jp.2014.170</a>
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Type
The nature or genre of the resource
Journal Article
2014
Backlog
Journal Article
Journal Of Perinatology
Kilbride H
Lantos JD
Sharma J
Weiner J
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
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URL Address
<a href="http://doi.org/10.3390/children1030302" target="_blank" rel="noreferrer">http://doi.org/10.3390/children1030302</a>
<a href="http://www.mdpi.com/2227-9067/1/3/302" target="_blank" rel="noreferrer">http://www.mdpi.com/2227-9067/1/3/302</a>
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Title
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The Role of Play in Children’s Palliative Care
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Children; life limiting illness; Life Threatening illness; psychological wellbeing; role of play; value of play
Creator
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Boucher S; Downing J; Shemilt R
Description
An account of the resource
Play is the universal language of childhood and the time and opportunity to play is every child’s right. The role of play as a vehicle for communication, a tool for distraction and its value in the holistic development of a normal child is without dispute. The role and value of play increase proportionately when a child is made more vulnerable through illness or disability. Despite this, providing time and opportunities to play can be overlooked or considered to be of little importance or relevance when the focus of the adult carers is the amelioration of clinical symptoms of the illness and on lessening the psychological impact the illness may have on the child. This paper outlines the role and the value of play as an integral component in the provision of palliative care for children with chronic, life-threatening and life-limiting conditions. It will show how providing appropriate equipment, sufficient time and relevant play opportunities not only improves the very sick child’s psychological wellbeing, but also allows the child to cast aside the confines and restrictions imposed upon them by their illness and for a few golden moments to be nothing more than a child at play.
2014-10
Identifier
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<a href="http://doi.org/10.3390/children1030302" target="_blank" rel="noreferrer">10.3390/children1030302</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2014
Backlog
Boucher S
Children
Downing J
Journal Article
life limiting illness
Life Threatening illness
psychological wellbeing
role of play
Shemilt R
value of play
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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URL Address
<a href="http://doi.org/10.12968/ijpn.2014.20.12.584" target="_blank" rel="noreferrer">http://doi.org/10.12968/ijpn.2014.20.12.584</a>
<a href="http://www.magonlinelibrary.com/doi/abs/10.12968/ijpn.2014.20.12.584" target="_blank" rel="noreferrer">http://www.magonlinelibrary.com/doi/abs/10.12968/ijpn.2014.20.12.584</a>
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Title
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Grief experiences of nurses in Ireland who have cared for children with an intellectual disability who have died
Publisher
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International Journal Of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Creator
An entity primarily responsible for making the resource
MacDermott C; Keenan PM
Description
An account of the resource
Background The personal grief experience of nurses who have cared for children with an intellectual disability who have died is little understood. Method This descriptive qualitative study was initiated to ascertain nurses' knowledge and personal experience of grief and how this is managed. Semi-structured interview was the method used to collect data from eight nurses who had cared for a child with an intellectual disability who had died. A pragmatic approach to qualitative data analysis was adopted. Results Of the eight main themes identified, the four most prevalent are discussed in detail: grief, relationship with the child, end of life, and support. The findings demonstrate that nurses have a good understanding of grief, but the way they experience and manage it varies. Conclusion The study suggests that nurses who have cared for children with an intellectual disability who have died may experience disenfranchised grief. Nurses seek support from a variety of sources. Organisational support is important for nurses following the death of a child for whom they have provided care.
2014-12
Identifier
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<a href="http://doi.org/10.12968/ijpn.2014.20.12.584" target="_blank" rel="noreferrer">10.12968/ijpn.2014.20.12.584</a>
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Type
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Journal Article
2014
Backlog
International Journal of Palliative Nursing
Journal Article
Keenan PM
MacDermott C
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
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URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2014.01.012" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpainsymman.2014.01.012</a>
<a href="http://www.jpsmjournal.com/article/S0885392414001948/abstract" target="_blank" rel="noreferrer">http://www.jpsmjournal.com/article/S0885392414001948/abstract</a>
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Title
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Palliative Sedation at Home for Terminally Ill Children With Cancer
Publisher
An entity responsible for making the resource available
Journal Of Pain And Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Palliative Care; Children; end of life; home care; Palliative sedation
Creator
An entity primarily responsible for making the resource
Korzeniewska-Eksterowicz A; Przysło Ł; Fendler W; Stolarska M; Młynarski W
Description
An account of the resource
Context The presence of symptoms that are difficult to control always requires adjustment of treatment, and palliative sedation (PS) should be considered. Objectives We analyzed our experience in conducting PS at home for terminally ill children with cancer during a seven-year period. Methods We performed a retrospective analysis of medical records of children with cancer treated at home between the years 2005 and 2011. Results We analyzed the data of 42 cancer patients (18% of all patients); in 21 cases, PS was initiated (solid tumors n = 11, brain tumors [5], bone tumors [4], leukemia [1]). Sedation was introduced because of pain (n = 13), dyspnea (9), anxiety (5), or two of those symptoms (6). The main drug used for sedation was midazolam; all patients received morphine. There were no significant differences in the dose of morphine or midazolam depending on the patient's sex; age was correlated with an increase of midazolam dose (R = 0.68; P = 0.005). Duration of sedation (R = 0.61; P = 0.003) and its later initiation (R = 0.43; P = 0.05) were correlated with an increase of the morphine dose. All patients received adjuvant treatment; in patients who required a morphine dose increase, metoclopramide was used more often (P = 0.0002). Patients did not experience any adverse reactions. Later introduction of sedation was associated with a marginally higher number of intervention visits and a significantly higher number of planned visits (R = 0.53; P = 0.013). Conclusion Sedation may be safely used at home. It requires close monitoring and full cooperation between the family and hospice team. Because of the limited data on home PS in pediatric populations, further studies are needed.
2014-11
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<a href="http://doi.org/10.1016/j.jpainsymman.2014.01.012" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2014.01.012</a>
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Type
The nature or genre of the resource
Journal Article
2014
Backlog
Children
End Of Life
Fendler W
Home Care
Journal Article
Journal of Pain and Symptom Management
Korzeniewska-Eksterowicz A
Młynarski W
Palliative Care
Palliative sedation
Przysło Ł
Stolarska M
-
Text
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<a href="http://doi.org/10.1016/j.jpainsymman.2013.12.233" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpainsymman.2013.12.233</a>
<a href="http://www.jpsmjournal.com/article/S0885392414001389/abstract" target="_blank" rel="noreferrer">http://www.jpsmjournal.com/article/S0885392414001389/abstract</a>
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Title
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Ethical Considerations in the Management of Analgesia in Terminally Ill Pediatric Patients
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Journal Of Pain And Symptom Management
Date
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2014
Subject
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parental authority for decision making for a minor; parental refusal of treatment in a minor; Right to pain relief
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Weidner NJ; Plantz DM
Description
An account of the resource
Research has demonstrated the significant symptom burden present at the end of life of terminally ill children. Medicine has always viewed the relief of pain and suffering as a fundamental human right and a moral and ethical obligation. At the end of life, pain and dyspnea are symptoms commonly experienced by both adults and children. Opioids are the mainstay in treating the suffering associated with pain and dyspnea; however, there exist several barriers to the use of opioids. We describe a case in which parents prevent a young patient from receiving adequate pain management during the course of a terminal illness. We discuss the importance of recognizing the barriers to opioid use and the ethical ramifications of failing to find common ground with the family. We highlight parental responsibilities and limitations of parental authority in decision making for their child.
2014-11
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<a href="http://doi.org/10.1016/j.jpainsymman.2013.12.233" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2013.12.233</a>
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Type
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Journal Article
2014
Backlog
Journal Article
Journal of Pain and Symptom Management
parental authority for decision making for a minor
parental refusal of treatment in a minor
Plantz DM
Right to pain relief
Weidner NJ
-
Text
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<a href="http://doi.org/10.7363/030261" target="_blank" rel="noreferrer">http://doi.org/10.7363/030261</a>
<a href="http://www.jpnim.com/index.php/jpnim/article/viewFile/030261/189" target="_blank" rel="noreferrer">http://www.jpnim.com/index.php/jpnim/article/viewFile/030261/189</a>
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Changing the focus of care: from curative to palliative care.
Date
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2014
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Soffritti S; Monari C; Sandri F
Description
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The improvements in the obstetrical and neonatal diagnosis and therapies have resulted into an increase in the survival rate of infants previously considered as non-viable. Debate is focusing on professionals’ behaviour about withdrawal or withholding of life sustaining treatment (LST) and administration of palliative care for newborns whose conditions are incompatible with a prolonged life. Decisions about treatment should be made jointly by the professionals’ team and the family, placing the interest of the baby at the very heart of the decision process. It is very important that the environment in which the family has to make the decision is characterized by openness, dialogue and frankness. A proper and effective communication with parents is always necessary and can resolve any conflict caused by disagreement. Furthermore, parents need time in the decision making process. Other supports, which could help the family in the final decision are the possibility to ask for a specialist’s second opinion and the involvement of religious leaders and of an indipendent clinical ethics committee. Withholding or withdrawal of LST does not mean cessation of care for the baby, it means to change the focus of care from curative to palliative care.
2014
Identifier
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<a href="http://doi.org/10.7363/030261" target="_blank" rel="noreferrer">10.7363/030261</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
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Conference Paper
2014
Backlog
Conference Paper
Monari C
Sandri F
Soffritti S
-
Text
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URL Address
<a href="http://doi.org/10.1016/j.jen.2014.05.003" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jen.2014.05.003</a>
<a href="http://www.jenonline.org/article/S0099176714002049/abstract" target="_blank" rel="noreferrer">http://www.jenonline.org/article/S0099176714002049/abstract</a>
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Title
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Death of a Child in the Emergency Department
Publisher
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Journal Of Emergency Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
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Death of a Child; Emergency department
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O’Malley P; Barata IA; Snow SK; Shook Joan E; Ackerman AD; Chun TH; Conners GP; Dudley NC; Fuchs SM; Gorelick MH; Lane NE; Moore BR; Wright JL; Benjamin LS; Barata IA; Alade K; Arms J; Avarello JT; Baldwin S; Brown K; Cantor RM; Cohen A; Dietrich AM; Eakin PJ; Gausche-Hill M; Gerardi M; Graham CJ; Holtzman DK; Hom J; Ishimine P; Jinivizian H; Joseph M; Mehta S; Ojo A; Paul AZ; Pauze DR; Pearson NM; Rosen B; Russell WS; Saidinejad M; Sloas HA; Schwartz GR; Swenson O; Valente Jonathan H; Waseem M; Whiteman PJ; Woolridge D; Snow SK; Vicioso M; Herrin SA; Nagle JT; Cadwell SM; Goodman RL; Johnson ML; Frankenberger WD; Renaker AM; Tomoyasu FS
Description
An account of the resource
The death of a child in the emergency department (ED) is one of the most challenging problems facing ED clinicians. This revised technical report and accompanying policy statement reaffirm principles of patient- and family-centered care. Recent literature is examined regarding family presence, termination of resuscitation, bereavement responsibilities of ED clinicians, support of child fatality review efforts, and other issues inherent in caring for the patient, family, and staff when a child dies in the ED. Appendices are provided that offer an approach to bereavement activities in the ED, carrying out forensic responsibilities while providing compassionate care, communicating the news of the death of a child in the acute setting, providing a closing ritual at the time of terminating resuscitation efforts, and managing the child with a terminal condition who presents near death in the ED.
2014-07
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<a href="http://doi.org/10.1016/j.jen.2014.05.003" target="_blank" rel="noreferrer">10.1016/j.jen.2014.05.003</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2014
Ackerman AD
Alade K
Arms J
Avarello JT
Backlog
Baldwin S
Barata IA
Benjamin LS
Brown K
Cadwell SM
Cantor RM
Chun TH
Cohen A
Conners GP
Death Of A Child
Dietrich AM
Dudley NC
Eakin PJ
Emergency Department
Frankenberger WD
Fuchs SM
Gausche-Hill M
Gerardi M
Goodman RL
Gorelick MH
Graham CJ
Herrin SA
Holtzman DK
Hom J
Ishimine P
Jinivizian H
Johnson ML
Joseph M
Journal Article
Journal Of Emergency Nursing
Lane NE
Mehta S
Moore BR
Nagle JT
O’Malley P
Ojo A
Paul AZ
Pauze DR
Pearson NM
Renaker AM
Rosen B
Russell WS
Saidinejad M
Schwartz GR
Shook Joan E
Sloas HA
Snow SK
Swenson O
Tomoyasu FS
Valente Jonathan H
Vicioso M
Waseem M
Whiteman PJ
Woolridge D
Wright JL
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1186/1471-2431-14-269" target="_blank" rel="noreferrer">http://doi.org/10.1186/1471-2431-14-269</a>
<a href="http://www.hiirc.org.nz/page/50708/what-do-bereaved-parents-want-from-professionals/" target="_blank" rel="noreferrer">http://www.hiirc.org.nz/page/50708/what-do-bereaved-parents-want-from-professionals/</a>
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Title
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What do bereaved parents want from professionals after the sudden death of their child: a systematic review of the literature
Publisher
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Bmc Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Creator
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Garstang J; Griffiths F; Sidebotham P
Description
An account of the resource
jsessionid=BFE3713CAABF8B3054BD2CFB4B108161?contentType=1033§ion=6591
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<a href="http://doi.org/10.1186/1471-2431-14-269" target="_blank" rel="noreferrer">10.1186/1471-2431-14-269</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
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Journal Article
2014
Backlog
Bmc Pediatrics
Garstang J
Griffiths F
Journal Article
Sidebotham P
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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URL Address
<a href="http://www.haywardpublishing.co.uk/_year_search_revi%20ew.aspx?JID=4&Year=2014&Edition=504" target="_blank" rel="noreferrer">http://www.haywardpublishing.co.uk/_year_search_revi ew.aspx?JID=4&Year=2014&Edition=504</a>
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Title
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What do physicians think about paediatric palliative care? A survey in Singapore
Publisher
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European Journal Of Palliative Care
Date
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2014
Subject
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survey
Creator
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Chong PH
Description
An account of the resource
While adult palliative care has been gaining wider acceptance, public and pr fessional awareness of the benefits of paediatric palliative care is still lacking. This significant concerns that could be barriers to early and appropriate referral.Poh Heng Chong has asked physicians working in the paediatric department of a Singaporean hospital how they feel about referring children to palliative care. His study reveals significant concerns that could be overcome by using a collaborative care model.
2014
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Journal Article
2014
Backlog
Chong PH
European Journal Of Palliative Care
Journal Article
Survey
-
Text
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URL Address
<a href="http://www.effectivehealthcare.ahrq.gov/N-1-Trials.cfm." target="_blank" rel="noreferrer">http://www.effectivehealthcare.ahrq.gov/N-1-Trials.cfm.</a>
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Design and Implementation of N-of-1 Trials: A User’s Guide
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Creator
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Panel DEcIDEMethods Center N-of-1 Guidance
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
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Journal Article
Description
An account of the resource
2014-01
2014
Backlog
Journal Article
Panel DEcIDEMethods Center N-of-1 Guidance
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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Backlog
URL Address
<a href="http://doi.org/10.1503/cmaj.141207" target="_blank" rel="noreferrer">http://doi.org/10.1503/cmaj.141207</a>
<a href="http://www.cmaj.ca/content/186/16/1195" target="_blank" rel="noreferrer">http://www.cmaj.ca/content/186/16/1195</a>
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Responding to the rising number of children living with complex chronic conditions
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Canadian Medical Association Journal
Date
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2014
Creator
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Cohen E; Patel H
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<a href="http://doi.org/10.1503/cmaj.141207" target="_blank" rel="noreferrer">10.1503/cmaj.141207</a>
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Journal Article
Description
An account of the resource
2014-11
2014
Backlog
Canadian Medical Association Journal
Cohen E
Journal Article
Patel H
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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<a href="http://doi.org/10.1016/j.carj.2014.09.001" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.carj.2014.09.001</a>
<a href="http://www.carjonline.org/article/S0846537114000758/abstract" target="_blank" rel="noreferrer">http://www.carjonline.org/article/S0846537114000758/abstract</a>
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Palliative Care: A Frontier That Should Be Explored by Radiologists
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Canadian Association Of Radiologists Journal
Date
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2014
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Munk PL
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<a href="http://doi.org/10.1016/j.carj.2014.09.001" target="_blank" rel="noreferrer">10.1016/j.carj.2014.09.001</a>
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Journal Article
Description
An account of the resource
2014-11
2014
Backlog
Canadian Association Of Radiologists Journal
Journal Article
Munk PL